In Their Own Words – That Day

I will never forget that day – December 7, 2010. After months of speculation, questions and wonder, it was official. My son was being placed on the Autism Spectrum. There were tears of course; immediately. Not that I have ever experienced it myself, but it reminded me of when people talk about a near-death experience. In an instant, my son’s whole life passed through my head and there were so many unanswered questions. Will he be okay? Will he be bullied? Will he get married? Will people think he’s stupid? I don’t know. I won’t know until he gets there. I allowed myself to cry for a couple of days and that was it. Tears weren’t going to change anything. I wasn’t crying because of the diagnosis. I was crying because as a mother you want to do everything to ensure that life will be great for your child, and I just couldn’t guarantee that. I couldn’t fix it.

My next priority was to learn. Boy was that a bit overwhelming. Like others, I was “aware” of autism, but didn’t totally understand it. In his evaluation, the psychologist report had mentioned that he had the potential to be extremely smart, but may be socially awkward. We are huge fans of “The Big Bang Theory” and after reading that my first thought was “oh my gosh we’re raising Sheldon!”

It was nice to be able to laugh at the situation, but research was obviously necessary. After doing an internet search for autism, I felt lost. There were so many websites, books, and blogs I didn’t know where to start. Who was I supposed to believe when the websites contradict each other? I remembered that teachers at my son’s school had done the Autism Speaks Walk that we had donated to, so that’s where I started. I came across a blog submission that brought me to tears. It was a letter entitled “Dear Future,” by Stuart Duncan. It was amazing; exactly what I was feeling. I didn’t know what the future would hold, but I wanted to be in it for my son.

I went to his website and immediately emailed him. I had to tell him how much that letter affected me and what I was going through. I needed someone to hear me that could relate to my situation. It was only the first week and I already found a friend. He answered my questions, put my mind at ease and introduced me to the amazing community of autism parents on Twitter. Just like a lot of people, I thought that Twitter was for useless facts about your favorite celebrities. I could not have been more wrong. I found parents just like me who were there to support each other and stick together. When you think that nobody else is going to understand you, someone will. Every time I sent a tweet with a question, I got answers from people who had been there. If I sent an update on something cool that my son did, I received cheers from people who had lived it. They got me. They were me.

My husband and I were taking the news a little different. He kept a lot of his feelings inside to process them while I wanted to share with everyone and start building my support network immediately. Mind you, some of them weren’t sure what to say, but I’m not sure I knew what I needed to hear either. I did get a lot of people telling me that they knew “so and so” who had a child/grandchild/cousin etc who had autism and they were doing great, so I shouldn’t worry at all. Um, no offense, but that’s just not true. One of the biggest misconceptions about autism is remembering that it is a spectrum and everyone is different. Right now we have no idea what the future will bring. At that time, I was still trying to process that it was my son; I didn’t care who else was dealing with it. I’m not that insensitive now, mind you, but in the beginning all that mattered was him.

After a couple of weeks when things were starting to get settled it was time for Christmas. I was learning a lot about what to do and what to expect for my son. However, I wanted to know how I could help others. It was shortly after Christmas when I found the answer. My son had received more presents than he actually needed and his birthday was only a few weeks away. Already family and friends were asking “what does he need?” Ummm, nothing. Am I a bad mother for saying that? Am I going to deprive him of presents from loved ones? No, but I wanted to do something better.

We decided to make his birthday have purpose, help others, and allow those that cared about him to do something meaningful. Give a gift that helps lots of kids. Bottom line, my son didn’t need any more “stuff.” I went back to the Autism Speaks website and found the Puzzle Builder fundraiser. I thought it would be perfect! I uploaded pictures of my son and we were ready to go. When I sent out the invitations for his birthday party, I sent a letter to everyone explaining what we were doing and why we were doing it. I got some very positive feedback about our choice. Of course I had to brag about how great our family and friends are and what we did, so I went back to my support system on Twitter.

Imagine my surprise when Autism Speaks answered me back and asked if I wanted to share my story. What??? Me??? Absolutely! So here I am. Our amazing family and friends raised approximately $800 with his puzzles!! That is a LOT of money for my little man’s birthday. That was far beyond what I would have expected and fills my heart with joy and pride. We made a difference. My son still had a fun party and of course still got some gifts.

I know that the road ahead is still a journey of unanswered questions. However, my son is making great progress. He is very high functioning and doing great in school. I know how lucky I am that he loves affection because many parents of children with autism don’t get to experience that. My heart breaks for them. No matter what lies ahead, my son is the biggest blessing in my life and he makes me laugh everyday. When people want to feel sorry for me, I remind them how blessed we are. Things could certainly be a lot worse. Autism is what my son has, not who he is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Related

I learned of Tracy & Conor’s story on Twitter. We interacted in messages and then we started emailing. I remember my first email to her. It was everything–everything I had experienced along the way, before and after the diagnosis. I told her everything I knew from therapies to diets to what celebrities were activists to the part in the autism community. I spent hours pouring out to her. I felt it was my duty to tell a mom new to the autism community about the joys, the fears and all that comes with that one little word: autism.

Everyday I get to hear of C’s new achievements and cheer him on with lots of other supportive parents online.

That’s what I want to continue to be for Tracy and Conor…their support and cheering section.

Thanks Michelle!! For the others of you reading, see this is what I have been telling you. Michelle is one of the amazing moms I met on Twitter and she has been an awesome resource for me. We live in different states but our kids are very close in age so we share good days/bad days all the time. She’s not kidding, she sent me such a long informative email and I was so thankful to have it. She inspires me as a mom.

Your story is so similar to ours. I had the exact same reaction when my daughter Lola was diagnosed. I cried, I wondered about the future, I overwhelmed and confused myself with research and finally found a support network. My daughter is also considered “high-functioning” and is doing so well, I feel blessed everyday.
Thank you so much for sharing your story.

your story made me cry…..i delt with the same feelings when my son was diagnosed.He was diagnosed 10 yrs. ago,he is very high functioning as well.My husband at the time was in complete denial. I don’t think daddy’s ever want to think thier little boys won’t be “normal”….But beleive me, you both are in for a treet!!! the last 10 yrs. of my life have been wonderful.That little angel you’ve been blessed with will challenge you, but he will surprise you on a daily basis with his little mind…it’s so awesome what we learn from our little angels,they are given to us for a reason…just always keep your mind open to all possabilitys…i wish you all the the luck in the world and god bless your wonderful little boy…

Hi Tina ~ I’m sorry I made you cry! It’s nice to hear from someone who has an older child. Most of the people I hear from our all little ones like mine. It’s good to know that older kids are doing great. Thank you for the blessings – I send them right back to you!!

What a beautiful boy! Our daughter taught many children, and her main iterest was those with autism. She was convinced there were answers out there. She passed away at age 41 seven years ago. The world is blessed by her life of mentoring many others to enter the field of education. She never lived to reach her goal of a master’s degree in autistic studies, but we know many of the students she mentored will! Blessings to you and your darling boy!

Thanks Joyce!! I’m biased, but I think he’s pretty darn cute!! :0) I’m sorry to hear about the loss of your daughter. It must be a blessing for you to know how many lives she touched. I’m so grateful for my son’s teachers. They are the best. Blessings right back to you!!

What a beautiful story. My son is diagnosed with Asperger. I’ve done lots of crying too. I worry so much about his future, but know that God has it all in control and he will be fine. You story touched my heart because I can relate to everything you said. Tracy is truly a blessing from God just like my Christopher. Aren’t we blessed to have been given such beautiful children.

Hi Aleca ~ Have you joined Twitter yet? I know I’m late with all my reply’s but we were on vacation the day after the blog was posted and am just finally getting settled after getting back. Once you join Twitter you can follow me @calormom ~ let me know you’re there and I will point you in the right direction!!

Beautifully written! My son was diagnosed 4 yrs ago at 7 yrs old. We are dealing with it and making progress- we have bumps along the way. But I want everyone to see what I see- his potential not his diagnosis. I would not change anything! He is who he is and a handsome young man! Thanks for sharing your story!

Hi Christine! You are definately not alone…have you joined Twitter yet? You should…amazing parents there. You should also get the 100 day kit from Autism Speaks if you haven’t done so already. It helps you through the first 100 days after a diagnosis. Let me know if you need anything else. Hang in there! :)

Thanks Tracy for leaving a comment. For those reading, this is another awesome mom I met on Twitter. Her son is older and has bullying issues, so she’s a great resource for info on that. She is awesome!!

This is beautiful. I have worked with many autistic children and their families over the years, and I can only imagine what you went through. Your positive attitude will certainly help your son’s journey a positive one. You are an amazing mommy,

Thank you so much. That means a lot to me. Thank you also for the work that you do. My son’s teachers are amazing and I keep telling him, he may not remember you or what he did here, but what you do for him will last a lifetime and that is priceless!

When I read this, it’s as if I could have written the entire thing myself. My son is also high functioning and like you, my husband and I thought “oh dear, he IS going to be a Sheldon Cooper!” My son was also diagnosed in December of 2010 and it was a very emotional holiday season for the family, to say the least.

Thank you for inspiring others with your choice of party. Next year, I will definitely throw a party with a purpose for him…one that would benefit other children within the spectrum.

Yay! Someone who gets my Sheldon comment, haha. I’m glad that I inspired you to throw a bday party to help others. It really was an amazing experience! I totally understand the emotions of the holidays. It was hard when you think of kids that should be so excited it’s Christmas morning and to my son, it was just another morning but a lot more crap in the living room, haha. Best of luck to you on your journey. :0)

Thank you all for taking the time to read and comment on our story. I’m humbled that you all felt inspired to share and send your blessings our way. It means more than I can tell you. I never expected this big of a crowd and I am truly grateful. I hope God blesses all of you. :0) xoxo Tracy

Trace and Oscar your process through this has been nothing short of remarkable. Through your courage I have happy stories to share to other people that are going through their own medical issues. Every time we see Conor his smile lights up a room and there is always something new to report on his progress. It very well might be a tough road for him as he grows up and it is very mature of you both to realize that and not live in denial. however, with that being understood having the support of such amazing and realistic parents will make those bumps in life a little more manageable.

Actually, I am not entirely speechless… You are an inspiration to many people and I am certain this article will continue to help. These networks are vital to reassuring parents of the unknown of what lies ahead. Real people sharing their real stories. It can help get you through one day at a time. You and your family are remarkable.

Tracy

March 18, 2011 at 7:06 pm

Colleen you’re the best! :0) That totally made me laugh…i’m speechless. Wait, no I’m not. Thank you for the kind words. You know we love you and appreciate your continued support…and we need a playdate soon!! :)

Your story goes right to my heart. I, too, walked that same road and when our son was diagnosed, we were expecting baby number two. My, Colt, will be 9 years old next month. He was 14 months old when we were concerned that something was wrong and after working with amazing early intervention specialists and educators, we were given the official diagnosis when he was ~ 4 years old. We are blessed that Colt is high functioning, a very loveable child, and making amazing strides! I can now say with confidence that I see a wonderful future for him …

We live in a beautiful little town in Alaska, so we are pretty remote. I would love to hear more about your twitter family. It is always wonderful to share stories and experiences … a support that I know God wants us to have.

Hi Stephanie ~ Thanks for the feedback. You should definitely get on Twitter. You can find me under @Calormom ~ Then you can search for people under Autism etc. There are wonderful moms and dads out there with lots of experiences to share. Especially if you are in a remote area, it will really help you connect to others like you. Hope to see you there! Tracy

wow! that is exactly how I felt when my son was diagnosed a year ago. No answers and wondering where do I go from here? We live in a small community and we haven’t found any support groups. The school system isn’t helpful when it comes to bullying. My son says he’s sick and comes home. I notice he is playing and there is no sign of sickness,so I ask if something happened at school. The answer is always a kid picking on him then he says ” why can’t I be like other kids? I try to be like them and I’m different.” As a mother, that breaks my heart and I want to shelter my baby from this ugly world!

Hi Jessica ~ I know what you mean. The bullying scares me as he is going to get older. I hope that with the media attention to bullying now that it may improve with time but who knows. Kids can be mean and that’s always been true. Just remind your son that he doesn’t need to be like other kids, because who he is, that’s what makes him special. I know it may be harder for him to undertand. You might also try going on Twitter. You may be surprised to find people in your area that you can connect with. Just last week I helped a mom in a remote town in Texas. I connected her to another mom that I found out lived near her and they are helping each other with support groups and school questions. It’s easy to make an account. Then find me @calormom and I can help point you in the right direction. Stay strong!

I have 2 children with autism. I know very well, very well how hard it is. But I have found that love, lovve and then more love we can get through it. I have had people call the cops on us, and I have had some just follow us around. I want to scream out sometimes and just tell them, but they wouldn’t understand even if I did, so I don’t waste my time. I was better prepared when I was told of my daughter being on the spectrum only becasue we had already gone down the road with Parker. I knew in my heart that Brieahna had it also. So I applaud you, not giving up, love love and more love. With God we can do this, and I am told I am like Job. So maybe that will help you some understanding Job and his faith. God does not give us anything we can not handle, nor does He give us anything He will not see us through. God Bless

I too cried when my son who is now almost 6 was diagnosed a week after his 2nd birthday. Believe me when I say-I still cry 4 years later. All I can say is I hope for the best for my son and all those living with Autism. I love the idea of the puzzle for the birthday invite-I think I will use that when my son’s birthday comes up in April. Thanks for sharing.

Sorry I didn’t get back to you sooner, but thank you for reading and for taking the time to leave a comment. It means a lot to me. I still have good days and bad days too. There will always be a reason for tears, but every day gives me a reason to smile too. Good luck with the birthday fundraiser. I hope it goes well! :0)

Tracy, thank you. My son has his final evaluation on April 15 and i am this big ball of emotions. I do not know anyone with a child on the Autism Spectrum but have worked with children on it, and i still feel lossed. i know this is a big request but wen OUR DAY comes can you please be here for any questions for me, because i dont have anyone.
Your story really touched me.

Cynthia ~ Of course you can contact me. It’s always going to feel different when it’s your child, don’t be surprised by that. I want to thank you for reading my blog and for leaving the comment. The fact that you were inspired to do so is the reason that I wrote it. As Stuart said to me, I get to be to others what he was for me. I am so humbled by that. I’m just a mom trying to make it day by day, but if I can help anyone, I’m so happy to do it. As I told the others, I highly recommend that you join Twitter. There are so many amazing Autism parents there that really got me through the last few months. You can find me there @calormom. You can also email me any time at calormom@gmail.com Keep your chin up and I hope to hear from you soon.

Whew…took me awhile but I think I finally answered everyone’s comments. I just want to say thanks again for reading the blog. It really meant a lot to me. I’m sorry it took me so long to get back to you. As I said above, the timing of the posting wasn’t great, and I certainly wasn’t expecting them to post it that fast or I would have waited until after our vacation. I hope you know that the time that has past doesn’t make me any less grateful for all of your wonderful comments!!! Thank you all, Tracy